Sleep disorders go unnoticed as children suffer, parents say

Most doctors don’t know what to look for, so ADHD becomes a catch-all diagnosis: sleep expert

Emmy Graham, front, sleeps better than she used to and the whole family is much happier. Dad Rob holds Emmy’s younger siblings Rachel and Darek while mom Kirsten looks on in their Burnaby home.

Photograph by: Wayne Leidenfrost
, Vancouver Sun

Even in the womb, Emmy Graham was different.

“We called her squirmy from the moment I felt her move,” says her mother, Kirsten.

“She was always moving, constantly, even in utero,” her father adds.

During a recent conversation in their toy-filled Burnaby home, Rob and Kirsten Graham, now in their early 30s, say they want to tell other parents about their five-year odyssey to find an answer for Emmy’s problems in the hope others won’t have to repeat their years of frustration, isolation and angst.

As an infant, Emmy would sleep only eight hours a day — in fits and starts, never in a stretch. There were no naps after the age of one and maybe six or eight hours of restless sleep a day. Toddlers are supposed to spend about half of every 24 hours asleep.

Without that much-needed rest, Emmy threw daily tantrums and screaming fits. Her development stalled; even at age five she couldn’t hold a pencil. She was diagnosed with a developmental co-ordination disorder, attention deficit hyperactivity disorder (ADHD), attachment disorder and anxiety.

“Her brain wasn’t sleeping enough to lay down the motor pathways for co-ordination,” says Kirsten. “None of the pieces can come together for kids if they’re not sleeping.

“So it’s not just a matter that this is a family problem where you have a tired, crazed kid that’s flying off the handle all the time. There’s a very real disability component.”

Finally, a year ago, Osman Ipsiroglu, a Vancouver pediatrician with expertise in sleep problems, diagnosed Emmy with restless leg syndrome, a common condition for adults, but rarely recognized in children.

Instead, it and other under-recognized sleep disorders are lumped into the growing number of ADHD cases in B.C., he say, adding that pediatricians and child psychologists should rule out sleep disorders before making an ADHD diagnosis.

“We believe that there is a tremendous overlap with ADHD ... If you don’t sleep well, you will have some behavioural issues the next day. You will be grumpy, you will less tolerant, possibly, and this is what happens with the kids. If they have chronic sleep deprivation, they may have an ADHD-like presentation.”

A misdiagnosis isn’t benign. If typical stimulant medications for ADHD are prescribed, the itching, crawling, creeping feelings of restless leg syndrome are amplified.

Untangling the difference between run-of-the-mill ‘I don’t want to go to bed’ pushback from a three-year-old and a child with a serious medical issue is not easy, Ipsiroglu admits.

He suggests an individualized approach to each child, something that’s effectively impossible right now in B.C. because there aren’t enough health professionals who know what they’re looking for.

“There simply isn’t the training at the medical level to recognize it,” says Kirsten. “We started to think: Maybe we are crazy. Maybe it is our fault.”

After their second child was born, it was evident that Emmy’s co-ordination and patience, at three, was about the same as her one-year-old sister. Although the family initially sought medical help for Emmy’s lack of sleep, the focus quickly moved to her worsening daytime outbursts.

Once that happened, their search for the answer to ‘Why can’t our daughter sleep?’ was forgotten. Instead, child psychiatrists told Kirsten that her lack of attachment to her child was the problem.

“I remember time and time again in the psychologist’s office saying, ‘but she came this way.’

“I won’t discount that there was a problem in our relationship, but it starts to grow out of having a child that won’t look at you, won’t touch you, (whom) you can’t comfort ... I was desperate as a mother that I couldn’t care for her,” Kirsten says.

“In hindsight, it’s obvious that a child that won’t look at you and won’t be comforted is in physical distress,” says Rob.

But no one before Ipsiroglu put the puzzle together.

Research over the past decade suggests that one- to five-per cent of people have restless leg syndrome, now called Willis Ekbom disease in recognition of the doctors who documented it in the 17th and 20th centuries. It’s a neurological disorder and may be related to levels of the neurotransmitter dopamine in the brain and iron in the blood. (See factbox.)

It’s a highly inheritable condition: both Rob and Kirsten have it — Rob more severely — but they weren’t diagnosed with it until Emmy responded to neuropathic pain medication, in her case Gabapentin, which is also used to control pain in extremities caused by diabetes.

“We’re seeing remarkable gains in Emmy now and we’re very hopeful that she’ll be able to catch up, but the truth is we don’t know what the long-term outcome is for her.”

Kirsten hopes concerned parents and professionals are able to create a proposed Children’s Sleep Network to spread information among health workers and establish a hotline for parents.

“We want people not to feel alone.”

Wendy Hall, a professor in the University of B.C.’s school of nursing, has conducted sleep studies and is currently writing up her findings following more B.C.-based research.

“It’s an overlooked public health issue,” she says. “We’re trying to work out how to raise sleep higher on the agenda for health- care professionals.”

Sleep dysfunction is not covered in the curricula for training doctor and nurses, she adds, so parents often end up seeking out ‘sleep consultants’ who have no governing body checking their credentials. “Less than one per cent (of families) get evidence-based help with sleep issues.”

Part of the problem may be found in changes within society, she says, with both parents working longer hours and pushing back bedtimes in order to spend more time with their children. Studies show a trend over time of both parents and children getting fewer hours of sleep as society seems to value it less. To make it worse, today’s electronic distractions, such as TV, websurfing and video games, make people want to stay awake later.

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